The facts about CP

Because of a lack of research pertaining to my Cerebral Palsy and being premature, I am still left with uncertainty as I age.

When I was a little girl, even with my physical problems I still assumed I would age in the same way as everyone else, but now I know that’s simply not true. It would never have occurred to me to think about the neurological side of my condition and how that would play out, how I would age physically and whether there is a link between the two.

Now just getting through the day can be a challenge for me. Having just come back from a weekend in Scotland having to cope with respiratory problems again, just reinforces those challenges. I believe there is a correlation between how much I excerpt myself and getting ill.

I have no idea how the neurological and the physical side of Cerebral Palsy correlate together, only what I have to deal with, but I am beginning to believe and see a link between the two. Through my experiences I now know more than I have ever known, because of what I deal with and yet there is still no more additional research out there, apart from what we already know about Cerebral Palsy and that is a sad reality for many of us.

All we know is what we have to deal with physically. What each of us deal with will be different, because different parts of the brain will always be affected. It would be difficult to do any research on that. My last Consultant was very open with me, when he said he would be very surprised if in his lifetime there was ever any research undertaken on Cerebral Palsy. I understand his sentiments but am saddened by those facts.

Finally, the neurological side of any condition is always the most important. Without the neurological side in tact we will always struggle physically and I believe that to be true.


28 May, 2014

6 thoughts on “The facts about CP

  1. I wonder how much is related to just being premature. I know a few kids that were premies and don’t have CP but still have problems. My niece was a month premature. She is almost 10 now and she is very tiny in size.

    Then there is my son’s foster brother that was born after 24 weeks and he has very mild CP. I think it is different for each case. But I also believe prematurity does have some kind of neurological relationship, then when you add CP to the mix it is worse.

    There is so much research done on all kinds of things and I would hope there will be more done on CP in the future, in our lifetime.

    1. Thanks Lisa! I agree there is a case for both sides and a case to include both. You’re absolutely right that when you add CP to being born premature (in my case) things will always be worse. The problem we have as well, is that in neurological terms, we don’t know how much worse we will be as we age.

      Even with the supplements I take I am beginning to struggle. I would like to think research will be undertaken in my lifetime, but it’s not looking like that will happen. As we both know, no two cases are the same, therefore how can research be undertaken?

  2. You’re welcome. Yes I see your point here.

    With no two cases being the same I can see that it would be difficult to do any research, but there is always hope that someone out there, some researcher that will be curious enough to want to do some kind of research.

    1. Yes, thanks Lisa. I hope so too. I’m not giving up on hope that one day we will know more about what we deal with.

      I have a slight concern on how I will continue to age with the condition. I look young for my age, but what I deal with physically exceeds my age.

  3. Yes I would imagine it would be connected as to how you would be affected by the amount of exertion you do during the day.

    I know for my daughter it gets a lot harder for her to function when she’s extremely tired, which is most of the time. Now I’m kind of wondering what research they do have for how CP affects older people. Hopefully things won’t be too difficult as you age, but it does sound like you do get worn down.

    It would be nice to know that there are things that could be done to make your life better in the long run!

    1. I feel for your daughter too Randy, but unfortunately for those of us who have CP, there is very little out there to help us understand the neurological process of how we will age with CP, apart from what we already know about, such as arthritis and osteoporosis etc.

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